‘I Would Have Given Up a Long Time Ago’ and Other Things Not to Say to Cancer Survivors

I have a “nest” I like to gravitate to anytime I feel anxiety, fear, anger or confusion relating to my long-term survivorship from Hodgkin’s lymphoma. It’s a Facebook page entitled “Living life after Hodgkin’s lymphoma.” It’s become my sanctuary for emotional support, and empathy above all else.

Recently I took to the page to post a question: “What was the stupidest or most ignorant response you ever got from someone after learning about your survivorship?” The answers floored me. I was provoked by a series of doctors who I felt had absolutely no ability to relate to a patient properly. For example, before a surgery, my anesthesiologist came in to meet with me and said, “I read through your chart. Wow. I give you credit. I would have given up a long time ago.” This was the guy who was about to be responsible for sedating me.

I asked for another anesthesiologist. Later, after I filed a grievance with Duke hospital, he would call me and sheepishly apologize. “I’m very sorry for my comment. I didn’t mean for it to be offensive.” Then what did he want that comment to do for me?

Do people really think before they make a comment to a survivor?

On the Facebook post, a survivor’s brother blamed her cancer for his behavioral issues. “Do you even know what it’s like to have a sibling with cancer?” Our family may make us feel guilty for our cancer causing them distress. My mother at one point told me, “We all know you’re worried about your CAT scan but you’re bringing everyone else down.”

Sometimes I'm left feeling that I shouldn’t say too much and keep the pain and fear inside, so I don’t annoy or aggravate others with the “same old song.”

Then there are others outside our family that are just as insensitive. One survivor who had lost her hair but didn’t want to wear a wig was berated by a woman in public exclaiming she was “scaring the children.”

Another had joined a mental health program to cope with her diagnosis and was told not to talk about her cancer-related issues during the group because it was hard for others to cope with her story.

Someone else was out shopping when she was stopped by a neighbor who she hadn’t seen in a while. “I’ve been dealing with some medical issues,” she said. The neighbor’s reply was, “at least it’s not cancer!” Her response? “In fact, it is.” Silence.

Another Hodgkin’s survivor shared that someone attempted to make light of the cancer, “You’ll appreciate life more.” “Um, no. I appreciated life just fine. It has been 30 years, and this ongoing experience has not improved life in any way. I am anxious, depressed, scared every day, angry, untrusting of medical professionals and our medical system and just really effing exhausted.”

What shakes me to the core most is what comes out of the medical professionals’ mouths. I have thought many times that there should be a class for medical students called bedside manner 101. One survivor who was pregnant when diagnosed had her doctor exclaim “Wow I hope the chemo doesn’t kill your baby.”

The takeaway from this is again another adage: think before you speak! Humans make mistakes. Some are naturally insensitive, but for a survivor, these comments can trigger severe anxiety and pain so when you don’t know what to say to someone who has gone through cancer, I’ll give you a tip, silence is golden.

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